Open a little window on one woman's adventures with multiple sclerosis

Listen to me. When you’re stressed and tense, the thing to do is to use your rubber lips and blow some raspberries. Seriously the more you do it, the sillier you feel, that’s how it works.

So the other night, I’m up and awake. My body is working against me and it’s keeping me awake. My legs are twitching. I can’t sleep and I am angry. I am shaking the bed rails, slamming them with my fists! I’m angry! The angrier I am, the more stressed I become and I want to scream!

What do I do? I pucker my lips, blow air out and make a ‘raspberry’ sound, a little bit of tension is released. I do it again and a smile creeps on my face. I do it again. I feel a little bit silly and I do it again. Silly feels good. I notice I can’t hold any tension in my face. When I pretend my lips are made of rubber and blow air out through them, making a silly sound, the wrinkled tension set between my eyebrows releases. I feel like laughing. I blow again! It feels better to be silly than angry. I can laugh at myself and I can laugh at my situation…mmmm? not quite. At least I relax a bit and I don’t feel as frustrated and angry anymore.

And now from youtube a baby blows raspberries and giggles hysterically…

You may call me, Albus. It has become apparent to me that writing this is taking too long. I will take it upon myself to finish it for ‘My Lady on Wheels,’ who you know as Rita. While we wait for the next visitor, whom I will greet enthusiastically at the door and who will arrive mostly to pet me and adore me, I will add a few thoughts…

My responsibility as supervisor of the goings-on at my home for my human bipedal family remain constant and true. Why yesterday, a female human with strong, sure hands arrived at the house. She helped ‘My Lady on Wheels’ to move her legs and arms, back and forth. I sat close by, licking ‘My Lady’s’ left knee, as is my duty. The therapist was unkind. She enticed me off to ‘my chair’ (also known as a box of files), gave me a treat and then moved the tub that gives me access to ‘My Lady’s’ side. I had to stand on my back paws, press my forepaws to the giant cushion to gaze at My Lady and continue the supervision. I grumbled and was displeased.

I notice since the therapist arrived and booted me from my place, My Lady moves more easily. She has regained her perch on wheels. My Lady has been tired of late. Previously this last week, she sat upon a much smaller, more awkward perch with two large wheels and two very small wheels. She used her arms to move the large wheels to get around the house. She was tired, I could tell and had not any time to play. The odour of this wheeled perch was offensive to my nostrils. I did not recognize this acrid and musty smell, but I heard the word ‘cigarette’ and the word ‘smoke’.

My lady rises early today, feeling refreshed from yesterday, no doubt. The movement and chatter coming from the two females during the therapist’s visit seems to revive ‘My Lady on Wheels’. I continue to rest in the sun, at least until a noise alerts me to the front door or my lady calls for my help. If the great wailing begins on the street, I will do my duty to alert my humans of this wailing melancholy.

It’s dark and I’m awake; I have to empty my bladder. With huge effort, I sit on the side of my bed. I will use the bed-rail beside me, and the grab-bar opposite me on the wall, to bring myself up to a standing position. I prepare my mind; moving my body consumes all kinds of energy: physical, mental and emotional.

Physically, I will engage my thigh muscles and my abdominal muscles, as I use my hands and arms push me up… however, I know that I will go nowhere, if I am not mentally engaged and emotionally confident. There is no room for dizziness or self-doubt.

I am in mid-movement. I’m halfway there, when a voice calls out to me “Use your glutes…” I know this voice. I heard it a long time ago, in a galaxy far far away.. “Use your glutes, Luke! Use the glutes.” Yes, did I mention that humour helps enormously?

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I am at the doctor’s office using the handicap accessible washroom. I’m seated on the toilet with my right hand holding the grab bar and I’m stuck. I have no idea how I’m going to get up. I consider calling out for help and wonder if people in the waiting room will be able to hear me. This has happened before; I regularly get stuck in accessible washrooms.

There is a knock at the door. A voice asks, “Rita, how are you doing in there?” “I’m stuck,” I reply. The voice responds,”Let me know if you need any help.” I say nothing; I’m used to doing things by myself. I’m too tired to ask for the help that I need and too tired to explain what I need. So I set my resolve to try again. I manage to lift myself up, but my feet can’t bear my weight and I drop back down. Alone and facing my wheelchair, I want to cry.

A voice whispers, ‘you can’t choose your problems, you can only choose the solution.‘ Surprised by the clarity of the voice in my head, I repeat it with confidence. I remind myself that I’m at the doctor’s office and it’s time to get up. I resolve to use what I learned at physiotherapy. I know which muscles to engage and how to concentrate and breathe into movement. I raise myself off the seat. First try, I get a little bit higher. Second try, I feel steadier. On the third try, I’m on my feet. I swivel the feet slowly and carefully. I switch hand positions, from grab bar to wheelchair and dump myself down. Finally, I’m sitting on my wheelchair. I resolve to do my exercises regularly; if only to get myself off my derrière with ease. Next time…

The image above is one of my most favourite paintings, “A Peaceful Waterfall” by Toronto artist Joanna Strong. See more of her work at http://joannastrong.com/

actually, that’s not true; moving around continues to be just as difficult. However, I am in a better frame of mind; it just switched. Like the time I dreamt of apple blossoms, when I was in my early 20s and feeling really down. The world was a dark place and everything I did was wrong. Then one night while I slept, I dreamt of apple blossoms. I watched as they unfurled their pink blossoms. Petal by petal opened, as the sun warmed my cheekbones and I smiled, lifting my face to the sun. I awoke refreshed.

In March, I thought I was dealing with yet another bladder infection. I was feeling down and went to the doctor to leave a urine sample and get another prescription for antibiotics. I was sad. Again? I can’t keep doing this! I will become immune to antibiotics. Three days later, I phoned the doctor’s office and was told the blood work came back clear. I did not have an infection. I ripped up that prescription and felt lighter. Whatever I was doing to keep the infections at bay was working. A few days later I woke up, looked out my bedroom window and smiled at the blue sky. It just switched; the day was going to be a good one. Then a friend I hadn’t seen in a long time dropped by for a visit. I got a lovely card in the mail, two in fact. If I was already feeling good, the feeling had solidified.

When simple tasks become arduous, sitting in my wheelchair and catching an episode of my favourite show is fun I deserve.

Have you caught podcasts? There are so many out there. They are much fun to listen to and I can play them all the time. Having other people’s words fill my head distracts me from the arduous peculiarities of life.

And, when I have energy for something, I choose to work on the podcast that I like to call ‘a little spiritual hour’ on the Internet. From The Healing and Cancer Foundation take a look at one of our podcasts.

I have been too distracted to write. Here’s another one of my distractions.

I think of her often these days. I recently saw a picture of myself that immediately brought her to mind. I am sitting in a wheelchair with my knees resting against each other. I am smiling and enjoying the company around me on a very social evening. What made me think of my grandmother? Even when she was in her 90s and used a wheelchair to get around, she was always ready to enjoy herself. With her pretty, high cheekbones and mischievous eyes, she was patient and clever. She taught me a lot. How to cook a good spaghetti sauce. How to be grateful for the small things in life. How to appreciate poetry.

I knew her for a long time, from the time I was born until she passed away when I was in my 30s. At different stages in my life, I got to know different sides of her. A charming, mischievous and open-minded artist, she worked very hard. She was unassuming, but expected nothing less than excellence. She loved and forgave. As I watched her age and grow more frail, while I grew stronger, I learned that the physical reality of her presence did not reflect the essence of who she was.

I remember when we were living in Ontario in the 1970s, she and my grandfather were taking English as a second language classes. She showed me an essay she had written for the class. She explained she had to choose a topic from a few the teacher had given. She chose to answer the following: “Is it better to have loved and lost, than never have loved at all?” I was young and remember reading the paragraph, but not quite understanding it. She explained to me that it was better to have loved and lost. I remember looking at her wide-eyed, thinking to myself: “Si Nonna, if you write it, then it must be true.” I think back now of all the stories she told me and realize I had absorbed this: there will be pain, frustration and discomfort in life; joy is mine to find.